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London/UK support network group??? Informal meet ups/forum

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  • London/UK support network group??? Informal meet ups/forum



    Hello UK members,

    After reading lots of the comments in the various posts, I just wanted to ask all the UK residents and in particular those living in London whether anybody would be interested in starting a support network group ? I suffer from post lasek complications that make daily life very difficult.
    Once I started searching on the internet, I found that the States are way ahead in providing invaluable advice, support and information through regional groups and through great websites such as this one.
    Personally, I think it would be so helpful to have a network of people in the UK who can immediately relate to what we are going through. Many people have empathy for a person with a broken arm or someone with flu but post laser complications can be a very difficult thing to explain to those who haven't been through it. As much as my family and friends have shouldered me through the tough times and continue to do so, to know that there is a group of people in the same country who know exactly what to say and know exactly what I am feeling, would be wonderfully comforting. Let's be honest, when it does go wrong, it's an incredibly lonely and terrifying experience!
    Anybody interested? And it doesn't always have to be about depressing stories, we can also talk about what does work, possible solutions, and how to move forward with this debilitating condition.
    It would be great to get to a stage where our eyes are no longer our first and last thoughts of the day!

    Hope to hear from you soon - even if it's just one person out there!
    Take care,
    Elizabeth


  • #2
    Hello, four years ago I had a "simple" eye op, and have had Bleph Dry eye and pain ever since. I know how you feel and I think it would be great to be able to speak with others to share ideas and support each other. If you havent been through this its hard to understand just how it is day to day to get through it, as supportive as friends and family try to be. I would love to be part of a support group.

    Comment


    • #3
      We have been talking about setting up a UK forum and my Ophthalmologist has really encouraged it. The issue is will enough people use it? Obviously it's still good to frequent this forum to read about developments in the world of dry eye that mainly come from the US or Japan.

      I'm near Tunbridge Wells if you know where that is and can travel to London easily.

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      • #4
        Someones got to get the ball rolling, even if its only a very small number of us who plan a trip to London and meet in a very public place, a major store coffee shop perhaps, have a chat meet each other and decide if we want to take it further. If we all turn up great, if no one is brave enough on the day, we can always shop. What do you think? Or is there another way to do this for those of us in the UK who want to pass on information about new products / what works for us that we can access / purchase here or new info that is coming our from our hospital visits? Any ideas? Any computer whizzes???

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        • #5
          Hi - I live in London and suffering from post LASIK issues so would be great to meet up with fellow sufferers. Has this group met?

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          • #6
            Hello, no not yet no one seems interested in coming along. If anyone else out there is interested, we could set up a meet somewhere near Fenchurch St Station?

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            • #7
              Maybe start a London UK 'Group' here for people to join (see top bar above), and post meeting details in Community & Resources - Events & Support Groups?
              Paediatric ocular rosacea ~ primum non nocere

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              • #8
                The Royal College of Ophthalmologists is holding a public consultation on Refractive Surgery Standards, closing 8 June 2016, and a Public Engagement session on 18 May 2016.- https://www.rcophth.ac.uk/ and https://www.rcophth.ac.uk/2016/04/ha...thalmologists/

                Please read the document and reply to them (refractive laser surgery and intraocular lenses). This is your chance.

                RCOphth text copied to DEZ at http://www.dryeyezone.com/talk/forum...rcophth-london
                Last edited by littlemermaid; 11-May-2016, 10:36.
                Paediatric ocular rosacea ~ primum non nocere

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                • #9
                  Anyone keen on making a gorup then or did this never happen, im keen...

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                  • #10
                    If there was a meetup planned, I'd definitely be interested.

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                    • #11
                      Have added everyone to group if anyone wants to join,

                      http://www.dryeyezone.com/talk/sgunc...eye-s-meet-ups

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                      • #12
                        I might be interested in this, but London is quite far, Birmingham is closer for me.

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                        • #13
                          I would be interested. I
                          i could get yo central London

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